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  • Writer's pictureBurt Rosen

3/26 Updates

Hey, long time no speak? What's new? Not much, what's new with you?

Ok, I lied, lots of things to report! I last left you on March 1. A lot has happened

  • Symptoms: Basically the same. My stomach is a bit better, my skin is a bit better (I am in photo therapy which is fun, basically go to a tanning booth for 2-3 times a week and get blasted by light for under 10 seconds to help reduce inflammation - and yes, if you get too much of it watch out!), my fatigue is a bit better. I guess I lied again. Symptoms are a bit better!

  • Current Treatment: The bastards at my health plan denied coverage of the drug my doc wanted me on (Lanreotide) and instead told me I had to get shots of Octreotide (Dr. Pegna was fine with it, only minor differences). Of course, it's all money. Lanreotide is $34k a shot (yes, you read that right) and Octreotide is $11k. At least that's what they told me. In addition to the Octreotide I am still on Lactulose for liver function, Protonix for ulcers and gastrin levels, and Eliquis (a blood thinner) to help with clots. Side note: One of my goals for 2023 is to cost my insurance company as much money as possible!

  • Got my first shot of Octreotide on the 8th of March. It's intramuscular which sounds really creepy. Basically, they gave me a shot in the muscle of my butt. Felt slightly strange, like a cramp, but not a big deal. That night it was sore but was all better the next day. I had some diarrhea as a result but even that cleared up.

  • Friday, the 10th, I had my CT Scans, and the fun began. My abdominal and pelvic areas showed my tumors had grown a bit which was to be expected since I wasn't on chemo anymore or anything to stop the growth. But my Dr. and I were both not too concerned especially since the growth was minimal and the next stop is surgery and the Octreotide should help stop the growth in the future while I am on it

  • Now, when I get CT Scans, I get two. One is pelvis and abdomen with contrast (a dye administered through IV to make things stand out better) and a Chest CT with no contrast

  • Well, the chest one came back with some of the known spots that I've had for a while but have been on the "watch but don't do anything" list. BUT this time, the radiologist said it's no longer on that list. While they don't know for sure what it is (they can't until they take it out or biopsy it) she posited that it could be another cancer. SO, insert appropriate freak out here. I immediately called my main oncologist (I now have to call him the main one since I have 2-3) and he referred me to a thoracic surgeon. The surgeon ordered a pulmonary function test and a PET Scan of my lung. That was not a fun Friday. Yes, the emotional dam burst.

  • The PET Scan said the same thing. Nodule in my upper left lobe, could be cancer (also might not be). I asked him about biopsy and he wants to remove it, not biopsy it since it's in a tough spot and biopsies can be inaccurate and cause issues for treatments with other cancers. So...April 19th, guess who's having lung surgery? It's called a VATS Wedge Resection, is minimally invasive, and uses scopes so not open surgery. I will be in the hospital for 2-3 nights most likely and he said recovery is fairly simple

    • While I am under anesthesia, they will take the nodule out and send it to pathology who will tell them if it's malignant or benign and if they got enough of it out. If not, they will get more during the same procedure.

    • Coming out of it I will probably be tired for a few weeks but shouldn't be too horrible

  • So, to sum up, the next 12 months will have lots of activity. April 19 is lung surgery. June is abdominal surgery. And Kidney surgery is TBD. The good news is that it will get a lot of this stuff out of me. The kidney and lung (if it is malignant) are "cured" by surgery. So two out of three will hopefully be gone by the end of the year.

  • I bet I know what you're thinking "holy shit that's a lot to deal with. I wonder how he and the family are holding up." Well, I can only answer for myself and will probably write a whole post about it. I always appreciate others checking up on Krista and the kids. For me, although the hits keep coming, I am still doing pretty well. I have a few tougher days now and there is more of me asking "why" and some days of just being sad or tired, but I know I will beat whatever gets thrown at me. As Chumbawumba says, I get knocked down, but I get up again, you're never gonna keep me down! And we will DEFINITELY be singing when we are winning!

This week:

  • Appointment on 3/27 with the Palliative care team and social worker (not surprisingly I definitely feel like I need more support now) and an Appointment with Dr. Pegna to touch base.

  • Pre-op appointment on March 29th to tell me what to do for the lung surgery

  • A few trips to the tanning booth

  • I GO TO NYC - I AM SOOOOOOOOOOO excited for my trip and to see everyone!

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Mar 27, 2023

What's in NYC?? I might drive down! <4 hours.

> One of my goals for 2023 is to cost my insurance company as much money as possible!

Boy, I can see THAT one getting passed around in insurance company email circles! Did you see the Pro Publica thing a few weeks ago where they caught two employees laughing about how this college kid would never get approved for the only drug that works for him?

Burt Rosen
Burt Rosen
Mar 27, 2023
Replying to

I saw the Dr Nick article too. Visiting family in NYC. I thought about Boston too but don’t want to overdo it.


Mar 26, 2023

Burt, thanks so much for the updates, even when they're not the news you wanted or expected. Surgery sucks, but I'm glad you'll get two of these cancers removed for good. Fuck Cancer! And have a blast in NYC. I'm so pleased you're going.

Burt Rosen
Burt Rosen
Mar 26, 2023
Replying to

Thanks Liz!

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